Jonathan Glover argues that parents who use genetic screening of their fetuses or embryos may still be committed to equality of respect for all. Evaluate Glover’s argument for this claim.
[To think that a particular disability makes someone’s life less good] does not mean that the person who has it is of any less value, or is less deserving of respect, than anyone else. (Glover: 2006, p35)In this paper I evaluate Jonathon Glover’s (Glover: 2006) argument that potential parents who use genetic screening of their foetuses or embryos and choose not to continue with pregnancy when disability is diagnosed may still be committed to equality of respect for all. My main contention is potential parents should be able to choose children with more potential to flourish than less, and that making this choice does not have to imply any lack of respect or denial of value towards anyone else, regardless of their capacity to flourish. My argument is in two parts – first, I present Glover’s (Glover: 2006) argument that we should be permitted to choose children that will flourish more than not less, and that in choosing not to have a disabled child this is the decision we could reasonably be making. I explain Glover’s (Glover: 2006) account of the relationship between disability and flourishing, and agree with his emphasis on the autonomy of the parent in making a reasoned assessment of the potential impact. I also present Glover’s (Glover: 2006) worry about ugly attitudes that may sour this assessment, and then move on to concerns of my own about the impact raising a disabled child may have on the flourishing of the broader family. In each case I argue that a reasoned assessment of impact communicates no lack of respect to the disabled. In the second part of my paper, I defend the first part from Adrienne Asch’s (Asch: 2000) expressivist argument that using the fact of the given disability as the sole criteria in determining not to continue the pregnancy does communicate a lack of respect to the disabled.
I: Choosing children that will flourish more rather than less
In ‘Choosing Children: Genes, disability, and design’, Jonathan Glover (Glover: 2006) has argued that disability limits the capacities for a child to flourish. This can help us understand what disability is. Against debates arguing disability can be a purely social construction, Glover’s (Glover: 2006) definition of disability posits there must be a failure or limitation of functioning, and that failure or limitation must impair capacities for human flourishing. Our capacity to flourish sets limits on what goals we can achieve in our lives, what desires we can fulfil, and this is true of all people, regardless of disability. Having an impaired capacity to flourish is not the same thing as having a life worth living or not being worthy of equal respect from others. But we can still quite reasonably prefer that our own capacity to flourish is not impaired, nor the capacity to flourish of others, and this extends to preferring that our children have more capacity to flourish than less by not having a disability. (Glover: 2006)
We cannot conclude the full picture of a foetus or embryos potential to flourish as a child from a genetic screening. There is much we cannot know about what desires, talents, and personality of the child will be, regardless of what general features might be correlated with disabilities like Spina Bifida, Cystic Fibrosis, Down syndrome, or other. Some disabilities will only mildly limit the capacity to flourish, some will majorly limit it, and we recognize too that accounts will vary between groups of people with a given disability as to how much the condition has limited them. But we can reasonably believe that, other things being equal, the limits on our capacity to flourish are greater with disability.
Glover's (Glover: 2006) account stresses the autonomy of the potential parents in choosing to have children with more rather than less flourishing. I think he is right to emphasise the discretion of the parents in making this choice. We usually endorse the right to decide how financially secure they should be before having a child, and how many children to have, believing they should have autonomy over these decisions which impact the flourishing of the child that will be born, themselves, and any other children(Glover: 2006, p34). The expectations the parents have may not always pan out, but we think it is possible to make a reasonable assessment and to make decisions based on that (Glover: 2006, p34). In emphasising autonomy and discretion, Glover’s (Glover: 2006) is a permissive account: there is a lot of flexibility for the parents here – Glover (Glover: 2006) does not argue for a duty to maximise the children’s potential to flourish, or that it is wrong to choose to continue a pregnancy (or intentionally cause one to be) below some objective standard of flourishing.
But Glover (Glover: 2006) allows that in making an assessment of the impact disability will have on the child’s capacity to flourish, there are right reasons and wrong reasons that could guide the parents. Ugly attitudes and prejudice are commonly held against those with disabilities (Glover: 2006, p30). When we think of a disability as a person’s main feature, when we shy away from people with disability, and when we resist accounts of positive experiences had by people with disability and their families, we cling to ugly beliefs (Glover: 2006). These types of beliefs sometimes culminate in pressure from the medical profession not to continue a pregnancy, or obstruct the potential parents from making a reasonable assessment.
We need to send a clear signal that we do not have the ugly attitudes to disability. It is important to show that what we care about is our children’s flourishing: that this, and not shrinking from certain kinds of people, or some horrible projects of cleansing the world of them, is what motivates us. (Glover: 2006, p35)
If we are serious about valuing the capacity to flourish, we must stamp out these ugly attitudes. But it does not follow that because some have ugly attitudes, no potential parents can make a reasonable assessment of the impact a disability will have on their embryo or foetus’ potential to flourish. It does not follow that there would always be belief that the disabled are not equally valuable or equally deserving of respect.
I would like to add to Glover’s (Glover: 2006) account by arguing the importance of considering the impact of having a disabled child on the rest of the family’s flourishing. I feel is an integral consideration for potential parents. We think it is reasonable for parents to delay parenting until they have achieved some of their own personal goals, such as travel and education, and to continue to pursue their own personal goals alongside being a parent. We think it is reasonable for parents to consider their other children when making reproductive choices – Parents with two or three children may feel sure they are capable of loving more children, but assess that more would require time and energy that would result in a loss to the children they already have. And we think it is reasonable for parents to value their romantic relationships, and to need time and energy to promote them. Raising a child with disability is bound to carry an additional cost in time and energy compared to a ‘normal’ child, though this will vary widely according to the disability and the particular child. Parents should be able to make an assessment of what this extra time and energy will be, and determine for themselves if their individual circumstances can permit this extra time and energy. To judge that they cannot is not to render a judgement against people with the disability.
I am also adamant that it is fair to consider the financial impact raising a child with disability may have on the family’s flourishing. The parent’s ability to earn an income may be reduced by the time commitment necessary in attending to the child’s needs. The costs of healthcare and education may be massively higher for the disabled child compared to a ‘normal’ child. Essential services for the disabled child may involve significant travel, at a cost of both money and time. The reduced income and increased expenses increase the sacrifices the parents and any other children must make, and it may be necessary to support the disabled child financially well into their adult life. When public health care, carer’s allowances, disability payments are available these are often woefully insufficient to meet the needs. To some it is terribly vulgar to raise financial obstacles as a reason not to proceed with a pregnancy, but that does not dispute that financial obstacles are incredibly real. Financial struggle increases the stress of an already stressful situation, which not only affects the flourishing of the parents and other children, but also has a flow on affect to the flourishing of the disabled child. And when the financial resources the parents are able to muster are inadequate to provide for the disabled child’s needs, the disabled child suffers here too. No part of the financial worries of raising a disabled child are unreasonable, there is no part of them that convey attitudes of disrespect towards the disabled.
II: Responding to the Expressivist argument
The support for prenatal diagnosis and selective abortion contravenes the goals of people with disabilities for full acceptance and inclusion in our society. (Asch: 2000, p234)
A disability diagnosis from a pre birth genetic screening gives us one fact about the child that would be born – that it is likely to have the particular disability. Adrienne Asch (Asch: 2000, p235) worries that when we let this one fact speak to the whole of the child’s potential, we are making a decision to terminate based solely on a first impression; we do not seek to learn about the talents, desires, and personality the child could have, or envisage the joys raising the child could bring to the lives of the parents.
Asch (Asch: 2000, p235-236) argues in ‘letting one part stand for the whole’ and dominate the decision to continue or not continue the pregnancy, we make a judgement that applies to any person living with that disability. The message is: the fact of your disability trumps any other facts about you. Giving birth to you was wrong. Your life is not worth living. The disabled person is left feeling that they must defend their right to exist, and that they constantly have to remind people that they are ‘more’ than just their disability (Asch: 2000, p236). Glover (Glover: 2006, p30) offers a case study where these feelings are expressed: disability rights commissioner and chair of the Social Care Institute for Excellence Jane Campbell recounts being in hospital with severe pneumonia. Campbell has spinal muscular atrophy, and was so worried that doctors would assume she would not want to be resuscitated if she fell unconscious; she kept herself awake for 48 hours. Her husband brought to the hospital a photo of her in university gown being awarded her degree, a reminder to the staff that she was more than just her disability, that she had a life worth being saved. (Glover: 2006, p30)
I think this is a haunting account and it shows that Asch’s (Asch: 2000, p235-236) criticism should be considered. It is the strongest from a group of claims by disability rights advocates labelled the expressivist argument. The central claims of expressivist arguments is that genetic screening for disability reinforces prejudice against the disabled and communicates the message that they are not worthy of the same respect as others. The argument works by speculating that when the relevant fact to a child’s potential flourishing is the disability, the relevant fact in determining a person’s actual flourishing is the disability. Glover (Glover: 2006) and Asch (Asch: 2000) seem in agreement that this can commonly occur, when people refuse to see passed a disability and to the genuinely complex dimensions of the person, but Glover (Glover: 2006, p33-34) also maintains (and I agree) that this is not always the case. It doesn’t always follow that we would transfer our projection about flourishing with a particular disability to actual people who have that disability. When we make a decision on a limited set of information, it does not necessarily follow that we would make the same decision when given a broader set of information.
And though we cannot deny Asch’s (Asch: 2000, p235-236) assertion that one fact is being used to determine the child’s entire potential for flourishing, it does not follow from this that the potential parents would not consult more facts if they could. This is simply the only fact that is available to estimate the child’s potential to flourish before the child is born. Once the child is born, we have more facts at hand, but any judgement that the child should (other things being equal) not have been born cannot be acted on. I am certain that many parents facing a diagnosis of disability after pre birth genetic screening genuinely struggle as they seek to determine a reasoned assessment of the impact the disability would have on the child’s flourishing, and the flourishing of themselves and their family. If there was a crystal ball into the future that could give them more facts about the child that would be born, they would look into it. Working only from the facts at hand does not convey a lack of respect for a broader set of facts that is not available.
I do believe the expressivist is right to worry about ugly attitudes, prejudice, and misinformation that may influence a parent’s assessment regarding the potential flourishing of the child and family, particularly when these attitudes are disseminated by the medical profession. I believe it is the persistence of these ugly attitudes that has kept the expressivist critique in public debate. But as Glover (Glover: 2006, p29-36) has argued, a consistent commitment to flourishing demands that we combat these ugly attitudes. There is no contradiction between preferring, on balance, not to have a disabled child in favour of another child who has more potential to flourish, and maintaining that respect towards the value and rights of the disabled must be defended. So it seems particularly uncharitable to me when the expressivist argument is particularly uncharitable when used to question the integrity of potential parents attempting to make a reasoned judgement.
In this passage, Asch smuggles into her ‘letting one part stand for the whole’ objection the implication that potential parents are unfairly assessing the extra burdens raising a child with disability will bring.
The prospective mother and her partner may feel that they haven’t the financial or emotional resources to “cope” with the “extra” demands that a child with a disability would entail. Or they may already have a child with the same or another disability and feel stretched to the limit and want a child whose needs and demands will not be “special” … that decisions still concludes that one piece of information about a potential child suffices to predict whether the experience of raising that child will meet parental expectations.
(Asch: 2000, p236 [The quotation marks are in original text; I have added the bold highlighting.])
I was surprised to encounter this passage. Choosing to emphasise the words I have highlighted (by placing them in air quotes) is an indirect and uncharitable way to criticise of the integrity of the potential parents. Asch herself grants that disability causes stress for parents and expense for them and society (Asch: 2000, p251) and that some families experience tremendous difficulty and upheaval (Asch: 2000, p249), yet this passage suggests any estimation that this will be the case is unfairly made and biased. I think it is also an appeal to the sense that appeals to finance are a vulgar basis to choose not to continue a pregnancy, but as I have already argued, any vulgarity makes financial considerations no less real, and no more disrespectful to those with disability.
Conclusion
In this paper I have argued that even if some potential parents do not make reasoned assessments when choosing not to proceed with a pregnancy after genetic screening reveals disability, it is implausible and unfair to tar all potential parents with the same brush. I have drawn on and added to Glover’s (Glover: 2006) argument that potential parents should be able to choose children with more potential rather than less, and shown how it is plausible to think that some parents are making this decision when they choose not to proceed with a pregnancy where the child would be born disabled. Finally, I defended this argument from the criticism put forward by Adrienne Asch’s (Asch: 2000) that using only the fact of disability to decide not to continue pregnancy communicates disrespect to the disabled.
References
Adrienne Asch, ‘Why I haven’t changed my mind about prenatal diagnosis: Reflections and refinements’, in Erik Parens and Adrienne Asch (eds.), Prenatal Testing and Disability Rights, Washington, Georgetown University Press, 2000.
Jonathan Glover, Choosing Children: Genes, disability, and design, Oxford, Oxford University Press, 2006, ch1., pp. 04-36.
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